Authors: Suli Sui and Margaret Sleeboom-Faulkner
This paper focuses on the current application of prenatal genetic testing and reproductive decision-making around thalassemia carriers in China. The study is based on fieldwork conducted in hospitals and research institutions, interviews with families with thalassemia-affected children, geneticists, genetic researchers and literature research during fieldwork in China from September to November 2007 and following update collections. The paper aims to provide insight into the ways in which thalassemia carriers decide to have a test for thalassemia and the choices available to prospective parents. The paper also analyses some factors affecting reproductive choices, and the decision to produce a ‘saviour sibling’, including financial implications, the state family planning policy, influential images and information conveyed through the media and propaganda, the advice and counselling from doctors, psychological pressure from the community, and social discrimination. The paper concludes with a discussion on the issues involved in the creation of ‘saviour siblings’, some of which are particular to China.
*This is an electronic version of an article published in Culture, Health & Sexuality: An International Journal for Research, Intervention and Care, ‘Special Issue: Quality of Offspring—The Impact of New Reproductive Technologies in Asia’, Vol. 12, Issue 2, pp.167-175. Culture, Health & Sexuality is available online at: http://www.tandfonline.com/doi/abs/10.1080/13691050902914110